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Autism, Behavioral Science, Events, Stanford News

Thinking in pictures: Stanford hosts Temple Grandin

Thinking in pictures: Stanford hosts Temple Grandin

Grandin Temple - smallEarlier this week, I got to hear a presentation by Colorado State University animal behavior expert Temple Grandin, PhD, who is widely known not just for her extensive work to enhance animal welfare, but also because she is one of the world’s most prominent individuals with autism. Like many others, I first became familiar with Grandin’s work through Oliver Sacks’ 1995 book, An Anthropologist on Mars. (The title came from Grandin’s description of how she feels when trying to decode the subtleties of social interactions.) Since I first read Sacks’ book, I’ve written frequently about autism research and treatment, and I’ve gotten some sense of how phenomenally important Grandin is to the autism community. So it was quite a thrill to be sitting just a few feet from her as she spoke to an overflow crowd at the School of Medicine.

Grandin’s talk focused on understanding animal behavior and reducing animals’ stress, but she interwove descriptions of her research with comments on how living with autism has influenced her work – and, indeed, how it influences the world around us. “A little bit of autism gives you Silicon Valley,” she quipped in the introduction to her talk. Although her subject was animals’ stress, at the heart, she was explaining different ways of thinking: in words or in pictures.

Animals think in pictures, especially when it comes to determining which elements of their environment are stressful or frightening, Grandin said: “Animals are all about sensory detail, little bits of detail we tend not to notice.” At one point in the talk, she showed a photo of a cow bending forward to investigate a spot of sunlight on the floor of the room where it was about to have a veterinary exam. To a human, this spot would likely seem insignificant, but to the cow, it is a foreign object that needs to be approached with caution.

“Novelty is a strong stressor for animals,” Grandin said, adding that if something visually new is forced in an animal’s face, it’s scary. The cow in the photo needs a few minutes to sniff the sun spot and figure out that it’s harmless; a human trying to force the situation will soon have a frightened, resistant animal to handle. Humans also have to keep in mind that our word-oriented brains may not categorize “novelty” in the same way that an animal does. For instance, an animal that has become accustomed to the sight of a blue-and-white umbrella may still be frightened by an orange tarp, Grandin said. To people, they’re both rain protection, but to a horse or cow, “It’s a different picture!”

Like many children with autism, Grandin began speaking later than most kids, and she still thinks in images more intuitively than words. “I see movies in my imagination, and this helped me understand animals,” she said. She likened her memory to Google Images, explaining that for her, a particular word will pull up many associated images, categorized by type. Her designs for meat-processing plants, now in use in half of the meat-processing facilities in North America, rely on her ability to mentally take a “cattle’s-eye view” of each step in the animal’s journey before slaughter, playing out a movie in her head that shows her where animals could be forced to encounter new things that might frighten them.

As well as describing her own work, Grandin advocated for broader acceptance of different kinds of thinkers, both with and without autism. People may think predominantly in pictures, or in patterns (that’s the math whizzes among us), or in words, she said, and we need educational and employment systems that can nurture and benefit from each of these ways of thinking. “There is too much emphasis on deficits [of children with autism], and not enough on building their strengths,” she said.

Grandin’s complete talk, which was hosted by the Department of Comparative Medicine, will soon be available on the department’s news website.

Previously: A conversation with autism activist and animal behavior expert Temple Grandin, Growing up with an autistic sibling: “My sister has a little cup” and Finding of reduced brain flexibility adds to Stanford research on how the autistic brain is organized
Photo by Rosalie Winard

Events, Global Health, HIV/AIDS, LGBT, Medicine and Society

Changing the prevailing attitude about AIDS, gender and reproductive health in southern Africa

Changing the prevailing attitude about AIDS, gender and reproductive health in southern Africa

5015384107_517a74d0b5_zDuring the 1990s and early 2000s, HIV/AIDS pummeled through southern Africa killing thousands. Although the epidemic has abated somewhat, the disease is still spreading through certain communities, including the lesbian, gay, bisexual, transgender and intersex (LGBTI) population.

In Zimbabwe, where homosexuality is illegal and President Robert Mugabe has actively spoken out against the LGBTI community, health-care provider Caroline Maposphere works behind the scenes, trying to change the prevailing attitudes and laws without sparking a homophobic backlash like that in Uganda. Maposphere, who serves as a nurse, midwife, chaplain and gender advocate, will visit the Stanford campus this evening to discuss her efforts.

“She tells great stories about how you deal with the kind of social and community issues that lie around HIV prevention and gay and lesbian health issues in a very homophobic and resource-poor environment,” said David Katzenstein, MD, a Stanford infectious disease specialist who met Maposphere in 1992 while working on the Zimbabwe AIDS Prevention Project.

Preventing the spread of HIV in Zimbabwe isn’t as simple as handing out condoms or launching an education campaign, although those are key strategies, said Maposphere. The nation is poor, has few health-care facilities of any kind and LGBTI rights are non-existent. The traditional southern Africa culture view of homosexually, which was sometimes attributed to witchcraft, further complicates the issue.

“It’s very difficult to reach out with services to groups that are not coming out in the open,” Maposphere said. ”We try to reach out and remove some of the barriers through discussion rather than being outright confrontational.”

Maposphere often encounters LGBTI individuals who feel they have been shunned by God and have been excluded from their churches in the predominantly Christian nation. In an effort to offer spiritual guidance as well as health care, she earned a college degree in theology and hopes to explore the religious aspects of her work while at Stanford.

In addition, Maposphere is planning to connect with gay-rights activists here and learn effective methods for countering homophobia in her native country. ”I’m very hopeful that things will change,” she said.

The free discussion begins at 7:30 PM in the Vaden Education Center on the second floor of the health center on campus.

Previously: Remembering Kenyan statesman and Stanford medical school alumnus Njoroge Mungai, In poorest countries, increase in midwives could save lives of mothers and their babiesSex work in Uganda: Risky business and In Uganda, offering support for those born with indeterminate sex
Photo by Remi Kaupp

Events, Medicine and Literature, Stanford News

“Deconstructed Pain:” Medicine meets fine arts

"Deconstructed Pain:" Medicine meets fine arts

Gernod_Weis_Oel_auf_Leinwand_150x200_1995Stanford’s medical school is just steps away from Stanford’s arts corridor, home to the Cantor Art Museum and the newly opened Anderson Collection at Stanford. This proximity results in a cathartic intersection between the arts and medicine, a connection captured by two recent events sponsored by Stanford’s Medicine & the Muse Program in Medical Humanities and the Arts.

The first event featured doctors and medical students reading poems they had written that were inspired by the paintings in the Anderson Collection at Stanford. The poetry reading included a performance by Stanford’s Musicians in Residence, the St. Lawrence String Quartet.

The second event, a gallery talk titled Honoring the Ghosts, celebrated Veteran’s Day by exploring the relationship between war trauma and art, through the paintings of the late Frank Lobdell, a World War II veteran and Stanford emeritus professor. The gallery talk, the first to take place in the Anderson Collection at Stanford, was an interdisciplinary event sponsored by Medicine & the Muse, the Stanford Arts Institute and the Anderson Collection. The event drew an overflow crowd, including World War II Veteran Genero Felice, Stanford student veteran Steven Barg and his wife, Shannon, also a veteran and Stanford physican John Scandling, MD, who majored in art history as an undergraduate.

The talk was introduced by Alexandar Nemerov of Stanford’s Art & Art History Department. Nemerov’s father, Howard Nemerov, was a World War II veteran who wrote about his war experiences, eventually winning a Pulitzer Prize for poetry. The audience listened intently as Sarah Naftalis, a doctoral student in Art & Art History, described Lobdell’s horrific World War II experiences: Part of a liberating party for the concentration camps in Germany, Lobdell’s unit came upon a burned barn full of concentration camp victims the Nazis did not want to be freed.

That experience influenced Lobdell’s work, and indeed, he stated that he worked out his war trauma “on the canvas.”

War trauma was also explored in the art, poetry and music event, when Hans Steiner, MD, used Jackson Pollack’s Lucifer as inspiration for his poem dedicated to his relatives killed in World War II.

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Autism, Events, Stanford News

A conversation with autism activist and animal behavior expert Temple Grandin

A conversation with autism activist and animal behavior expert Temple Grandin

Grandin Temple - 560

In the inspiring film, “Temple Grandin,” we learn the remarkable story of a woman born with autism who, as a young child, communicates through screaming and humming, and is given to fist-pumping outbursts of frustration. But Grandin, played brilliantly in the film by Claire Danes, has a rare affinity with animals and a keen sense of their needs. She ultimately becomes a renowned expert in animal behavior, a university professor and a consultant to major U.S. companies.

Grandin, PhD, one of the world’s most famous people with autism, will visit Stanford’s medical school next Wednesday to deliver a talk entitled, “Animals Make us Human.” In anticipation of her presentation, we asked her to answer five questions about the link between autism and animals. Her answers – like this one – offer a window into the world of autism, while providing a sense of Grandin’s character and thought process:

Animal cognition has similarities to autism cognition. Animals are very aware of small, sensory details in the environment. People on the autism spectrum excel at work involving details. SAP, a large computer company, is hiring people on the mild end of the autism spectrum to debug and correct computer programs.

Concepts are formed from specific examples. To train a dog to always obey the “sit” command, it must be taught in many different locations. If all the dog’s training is done in the living room, the dog may only obey the commands in the living room. To teach a child with autism about road safety, he needs to be taught in many different locations. These similarities between animals and autism apply only to cognition. They do not apply to the emotions. Animals are highly social and emotional creatures.

Her presentation begins at noon in the Clark Center on the medical school campus and will be followed by a book signing at the bookstore at the Li Ka Shing Center for Learning and Knowledge. The talk, sponsored by Stanford’s Department of Comparative Medicine, is free and open to the public. If you’re local and able to attend, I would get there early, as I believe this is going to be one very popular event.

Photo by Rosalie Winard

Events, In the News, Research, Science, Stanford News

Breaking through scientific barriers: Stanford hosts 2015 Breakthrough Prize winners

Breaking through scientific barriers: Stanford hosts 2015 Breakthrough Prize winners

6018618935_38997291a8_zYoung scientists, I have good news: Nearly all of the 2015 winners of the Breakthrough Prize in Life Sciences pledged to devote at least some of their new-found riches to education programs that encourage budding scientists. No details yet, as the prizes were less than a day old when the researchers announced their plans at the Breakthrough Prize Life Sciences Symposium hosted by Stanford  yesterday.

“The Breakthrough Prize winners have done such amazing things,” said Lloyd Minor, MD, dean of the School of Medicine. Minor lauded the  founders of the award, Silicon Valley luminaries Sergey Brin and Anne Wojcicki, Jack Ma and Cathy Zhang, Yuri and Julia Milner, and Mark Zuckerberg and Priscilla Chan. “They have put together this wonderful way of rewarding and awarding scientists for the work they are doing. It’s a real privilege for us at Stanford to host the symposium.”

The six scientists, who each won a $3 million award, fielded questions and let the audience in on a secret: the path toward scientific success wasn’t always easy.

“I would have never, ever in a million years have predicted I would have been sitting up here,” said C. David Allis, PhD, a professor at The Rockefeller University who was honored for his discoveries in chromatin biology, or the study of the proteins associated with DNA. Chromatin was once thought to be useless and Allis said he received plenty of criticism about his research focus.

Jennifer Doudna, PhD, a professor of molecular and cell biology and chemistry at UC Berkeley, said she didn’t know any scientists growing up in Hawaii. It wasn’t until a cancer researcher visited her high school, giving Doudna her first glimpse at her future career. Doudna, who is also affiliated with the Howard Hughes Medical Institute and the Lawrence Berkeley National Lab, won along with microbiologist Emmanuelle Charpentier, PhD, for their work on genome editing. Charpentier leads the department of regulation in infection biology at the Helmholtz Centre for Infection Research in Germany.

Gary Ruvkun, PhD, said that although he’s a professor of genetics at Harvard Medical School and the Massachusetts General Hospital, he still hasn’t mastered the art of mentoring. “I’ve had people in my lab refer to me as the least grown up,” he said.  Ruvkun was recognized — along with molecular biologist Victor Ambros, PhD, of the University of Massachusetts Medical School — for their work on microRNAs, small pieces of RNA that regulate gene expression.

All of the winners thanked their family, mentors, colleagues, but Alim Louis Benabid, MD, PhD, thanked his patients as well. Benabid, board chairman of the Clinatec Institute in France, said many patients are embarrassed when their doctor asks them to take off their clothes. His patients let him stick his fingers in their brains, he joked. Benabid was honored for demonstrating that deep brain stimulation can alleviate some symptoms of Parkinson’s disease.

In the full-day symposium, several former Breakthrough Prize winners spoke, and Bay Area graduate students and postdocs hosted a poster session.

Previously: Are big-money science prizes a good thing?, Funding basic science leads to clinical discoveries, eventually and Why basic research is the venture capital of the biomedical world
Photo by Petras Gagilas

Ask Stanford Med, Chronic Disease, Events, Health and Fitness

Examining the role of exercise in managing and preventing diabetes

Examining the role of exercise in managing and preventing diabetes

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More than 29 million adults and children in the United States are living with diabetes, and it’s estimated (.pdf) that an additional 86 million Americans ages 20 years or older have prediabetes, putting them at increased risk of developing the disease.

The good news is that lifestyle modifications can be an effective method for managing or preventing diabetes. In recognition of National Diabetes Month, I reached out to Baldeep Singh, MD, a clinical professor at Stanford who focuses on chronic disease management, to discuss the importance of regular physical activity for patients diagnosed with diabetes and those working to limit their risk of developing the disease. This Thursday, Singh will explore the topic more in-depth during a Stanford Health Library event at the Arrillaga Alumni Center on campus, where attendees can also have their blood glucose checked. The discussion will also be webcasted for those unable to attend in person.

In this Q&A, Singh highlights scientific evidence showing that staying active has a beneficial effect on insulin sensitivity, and discusses the potential of exercise, in combination with other behavioral changes, to induce partial, or full, remission of type 2 diabetes.

How does regularly exercising help in preventing or delaying type 2 diabetes?

The benefit of exercise in preventing diabetes has been demonstrated in several studies. A meta-analysis of 10 studies of physical activity and type 2 diabetes reported a lower risk of developing diabetes with regular moderate physical activity, including brisk walking, compared with being sedentary

Additionally, in a subsequent prospective cohort study in men, either weight training or aerobic exercise for at least 150 minutes per week was associated with a lower risk of developing type 2 diabetes compared to those with  a control group who did no physical activity.

Why is engaging in physical activity important in managing type 2 diabetes?

In patients with type 2 diabetes, studies show that short-term exercise training improves insulin sensitivity just as it does in non-diabetics. In patients with type 2 diabetes treated with medication, exercise tends to lower blood glucose concentrations.

Exercise improves glycemic control in patients with type 2 diabetes, as illustrated by the findings of several meta-analyses of trials examining the effect of exercise on glycemic control in patients with type 2 diabetes. Exercise training reduces glycosylated hemoglobin (A1C) values by approximately 0.5 to 0.7 percentage points compared with control participants.

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Events, Health Costs, Health Policy, In the News, Medicine and Society, Stanford News

Experts discuss high costs of health-care – and what it will take to change the system

Experts discuss high costs of health-care - and what it will take to change the system

4386861133_5e79734a6f_zNew York Times reporter Elisabeth Rosenthal, MD, visited Stanford this week for a Health Policy Forum, “Can we put a price on good health? Controlling the cost of health care,” with Stanford health-policy researcher Doug Owens, MD.

Those who attended looking for answers, easy fixes, or a master villain were out of luck. Instead, attendees gained insight into a convoluted system that all agree is broken, yet no one has the total power, or know-how, to fix. Here’s Rosenthal:

The issues and the problems are so diffuse… There’s the tendency to be very reductionist – ‘Oh, it’s the hospital, it’s the insurance companies, it’s pharma’… We’re all so codependent and it’s all so intertwined.

Finances dictate what we do and the incentives are so powerful. The message to patients is that we’re responsible too.

So that complimentary coffee you might get in a hospital lobby? Not actually free, Rosenthal said. She knows: While reporting for the well-known series “Paying Till It Hurts” she has talked to scores of patients and doctors and insurance representatives and policy-makers.

The main problems with the American health-care system are cost, quality and access, Owens said. The Affordable Care Act improved access, yet did little to lower costs or improve quality, he said.

And costs will continue to escalate if all the players remain most responsive to economic pressures, Rosenthal said. “Physicians feel like their income is being squeezed. Hospitals are better prepared to push back, and hospitals and physicians are looking to recoup some of that lost income in other ways. What’s lost in that very real tug of war is that patients are held hostage in the middle. That’s what’s distressing,” she said.

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Cancer, Events, Genetics, Imaging, Stanford News, Surgery, Women's Health

Don’t hide from breast cancer – facing it early is key

Don't hide from breast cancer - facing it early is key

cat_hiding-pgMy cat suffers from acute anxiety. Although she and I have lived together for more than 12 years, and the worst thing I’ve ever done to her was cut her nails, she’s terrified of me. (She’s also very smart – she runs from the sound of my car, but not my husband’s). During trips to vet, Bibs hides her eyes in the crook of my elbow.

It’s a strategy that’s only minimally effective. After all, what I can’t see, or don’t recognize, can still hurt me.

Take breast cancer. It terrifies most women. And if you don’t look for it, you won’t find it. But if you do look, and find it early, you might save your life and your breast, says Amanda Wheeler, MD, a Stanford breast surgeon. She joined other Stanford breast cancer experts at a recent public program sponsored by the Stanford Women’s Cancer Center called “The Latest Advancements in Screening and Treatment for Breast Cancer.”

“One of our biggest challenge is women are scared of breast cancer, but[we have to get] the word out that we have such great advances, we’ve just got to catch it early,” Wheeler said.

She pointed to a tiny dot on a screen. At that size, Wheeler said, breast cancer is almost 100 percent curable. She performs a small lumpectomy. If it’s a little bigger, she can still probably save the nipple.

And if the entire breast must be removed, surgeons like Rahim Nazerali, MD, come in. Nazarali explained the importance of choosing a reconstruction surgeon carefully: The doctor should be accredited by the American Society of Plastic Surgeons and have experience with microsurgery, preferably on the breast. There are different ways to remold a breast and doctors can use either a synthetic implant or a patient’s own tissue, from their abdomen, hips or thighs, Nazerali explained.

All of Wheeler and Nazerali’s artistry depends on expert imaging performed by specialists like Jafi Lipson, MD, whose message at the event was simple and encouraging.

Thanks to many new developments, mammography isn’t the only way to detect nascent breast cancers, Lipson said. Her team can employ 3-D mammography, or tomosynthesis, to reveal a layered look at a breast. And genetic screening, particularly for those with a history of breast cancer in the family, can provide the earliest warning signal of all, the breast cancer team said.

Women no longer need to hide their eyes from the risk, the experts emphasized. Women should take a peek – there’s help coping with what they may find.

Previously: Screening could slash number of breast cancer cases, The squeeze: Compression during mammography important for accurate breast cancer detection, Despite genetic advances, detection still key in breast cancer, NIH Director highlights Stanford research on breast cancer surgery choices, Breast cancer awareness: Beneath the pink packaging and Using 3-D technology to screen for breast cancer
Photo by Notigatos

Cancer, Events, In the News, Patient Care, Stanford News

A neurosurgeon’s journey from doctor to cancer patient

A neurosurgeon's journey from doctor to cancer patient

image.img.320.highEarlier this week, I had the chance to hear Stanford neurosurgeon Paul Kalanithi, MD, discuss living with advanced-stage lung cancer in a conversation with palliative care specialist Timothy Quill, MD. The idea for the night’s event, which was held on the Stanford medical school campus, was to provide a good example of how the doctor-patient relationship can help improve quality of life for the very sick. On stage before a packed audience, Kalanithi, prodded by Quill’s gentle but pointed questions, told the story of how serious illness changed his life. As I wrote in an online story posted yesterday:

“Are there things in particular that you worry about now?,” asked Quill… a professor of psychiatry and medical humanities at the University of Rochester School of Medicine and an expert in end-of-life decision making. “Not really,” [Kalanithi] said. “I am sad at not seeing my daughter grow up, at probably not being here long enough for her to have a memory of me. I try to worry about things that are actually changeable. I worry about getting my book finished. I’d like to have that done for my daughter to know me.”

What surprised Kalanithi most about his life after being diagnosed with lung cancer was just how hard it was dealing with those “existential” questions, he told Quill:

“Having to deal with questions like, ‘What am I going to do with my life?’ was exceedingly difficult. After realizing I wasn’t going to die in weeks or months, figuring out what I was going to do with that time was a struggle.”

Kalanithi has reorganized his priorities since his diagnosis in May 2013, setting new priorities for a much shorter lifespan than he once expected – planning for years instead of decades. He and his wife got their finances in order, they had their first child July 4. Kalanithi said he has found solace in his love of poetry, and through his writing. Kick-starting a writing career that he had planned to start in 20 years was one of those changes.

In January, he wrote an op-ed piece for the New York Times about his cross over from physician to patient titled: “How long have I got left?” He told the audience how surprised he was at the overwhelmingly positive response he received to the story. “My own thoughts on something very personal, really resonated with people. I still get an email every other day in response to the New York Times piece. It’s a great inspiration to me to remember why writing is important.” [Editor's note: Kalanithi's recent Q&A here on Scope has also drawn massive attention; it's already one of our most popular posts of the year.]

Kalanithi’s final message, particularly to those young physicians and medical students in the audience, was to listen to your patients. Take time to get to know them. Remember why it is that you went to medical school. When asked if he treats his own patients differently since his diagnosis, he was characteristically thoughtful. “I think I felt a depth that I didn’t before… But I had excellent role models. I was trained you don’t just go over what are the risks and benefits. You really try to convey as much as you can about what it’s going to feel like.” He told his favorite example of a pediatric oncologist who he observed talking to parents whose daughter had just been diagnosed with a brain tumor. The doctor’s advice: “You need to support each other. You have to prepare your patients as much as you can for that larger emotional experiential landscape. You have to get enough sleep.”

Previously: “Stop skipping dessert:” A Stanford neurosurgeon and cancer patient discusses facing terminal illness and No one wants to talk about dying but we all need to.
Photo by Norbert von der Groeben

Cancer, Events, Patient Care, Public Health

“Stop skipping dessert:” A Stanford neurosurgeon and cancer patient discusses facing terminal illness

"Stop skipping dessert:" A Stanford neurosurgeon and cancer patient discusses facing terminal illness

terminally_ill

Updated 10-23-14: Dr. Kalanithi spoke about this topic on campus earlier this week; more on the event, and his insights, can be found here.

***

10-20-14: When Paul Kalanithi, MD, a chief resident in neurological surgery at Stanford, was diagnosed at age 36 with stage IV lung cancer he struggled to learn how to live with conviction despite a prognosis of uncertainty. He found comfort in seven words from writer Samuel Beckett, “I can’t go on. I’ll go on.”

That mantra has given Kalanithi the strength to face his own mortality and have tough conversations with his wife and loved ones about the future. Tomorrow evening, he’ll join palliative-care specialist Timothy Quill, MD, for a discussion about end-of-life decision-making. The campus event is free and open to the public; no registration is required.

As a preview to the talk, Kalanithi talked with me about his experience as a patient and about the importance of end-of-life decisions.

How has your prognoses changed the way you talk to patients and their loved ones about grim news?

In large part, the way I talk to patients and their families hasn’t changed, because I had excellent role models in training. I remember witnessing a pediatric neurosurgeon talk parents through the diagnosis of their daughter’s brain tumor. He delivered not just the medical facts, but laid out the emotional terrain as well: the confusion, the fear, the anger and – above all – the need for support from and for each other. I always strove to emulate that model: to educate patients on the medical facts isn’t enough. You have to also find a way to gesture towards the emotional and existential landmarks.

Seeing it from the other side, it’s really hard, as a patient, to ask the tough questions. It’s important for the doctor to help initiate these conversations. I think it’s worth addressing prognosis and quality of life with patients, asking them what they think. My own assumptions about my prognosis were way off base. As a doctor, you can’t provide definite answers, but you can remove misconceptions and refocus patients’ energy.

Finally, I think, if you are the oncologist, it’s important to establish yourself as a go-to for any questions. Patients are bombarded with well-meaning advice, from dietary recommendations to holistic therapy to cutting-edge research. It can easily occupy all a patient’s time, when you ought to also spend time thinking about the priorities in your life. Physicians can also advise patients, as my dad would insist, that they can stop skipping dessert.

What is your advice to patients who are struggling with the certainty of death and the uncertainty of life?

I’ve written a little bit about facing terminal illness in The New York Times and The Paris Review. I found the experience difficult. I still find it difficult. It is a struggle. The problem is not simply learning to accept death. Because even if you do come to terms with finitude, you still wake up each morning and have a whole day to face. Your life keeps going on, whether you are ready for it to or not.

In some ways, having a terminal illness makes you no different from anyone else: Everyone dies. You have to find the balance – neither being overwhelmed by impending death nor completely ignoring it.

You have to find the things that matter to you, in two categories. The first is of ‘the bucket list’ sort. My wife and I always imagined revisiting our honeymoon spot on, say, our 20th wedding anniversary. But I didn’t realize how important to me that was until we decided to go back earlier (on our 7th anniversary, instead, about four months after I was diagnosed).

The second is, as all people should be doing, figuring out how to live true to your values. The tricky part is that, as you go through illness, your values may be constantly changing. So you have to figure out what matters to you, and keep figuring it out. It’s like someone just took away your credit card, and now you really have to budget. You may decide that you want to spend your time working. But two months later, you might feel differently, and say, you really want to learn saxophone, or devote yourself to the church. I think that’s okay – death may be a one-time event, but living with a terminal illness is a process.

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